Fragile X Syndrome (cont.)
In this Article
What are the options for adults who have Fragile X syndrome?
IDEA requires transition plans for moving from one phase of life to another, and the move from teenager to young adult to adult is no exception. The special services team, which can include family, teachers, a school psychologist, and other developmental specialists, makes the transition plan based on the individual's needs, interests, and skills. These plans may include vocational assessment and training, additional education, supported employment, and community participation. IDEA requires that the plan be in place by the time the individual is 16 years old. The plan will also consider the individual's level of independence to determine what type of living arrangements he or she might benefit from in the future.
As the teenager with Fragile X gets closer to finishing high school, or to his or her 21st birthday, the structure of his or her day may change to include work/study programs, job-related behavior training, and independent living classes. With the proper treatment and training, a young person with Fragile X may be able to live on his or her own, hold a job, and be an active member of his or her community.
What should I do if I find out someone in my family has Fragile X syndrome?
If someone in your family, a child or an adult, is diagnosed with Fragile X, you may also want to be tested to see if you have a mutated FMR1 gene. It is now possible to test for Fragile X in people of any age, as well as before birth. These tests are simple and accurate.
At present, testing for Fragile X is not done routinely. The tests are often done to help diagnose a child who is developmentally delayed or shows signs of autism or mental retardation.19 Couples who have one or more relatives with mental retardation of unknown cause may also want to be evaluated before deciding to have a child.
Health care professionals may also recommend an evaluation for Fragile X in a person with one of the following traits:20
Tests commonly used to diagnose Fragile X
A number of tests are used to diagnose Fragile X. Each test has its limitations, so in many cases more than one test may be used. The most accurate tests are DNA tests.
Prenatal testing for families who are at risk
A pregnant woman who has characteristics that place her at risk for Fragile X, such as features of Fragile X or a family history that suggests the presence of Fragile X, may want to have a prenatal test. During such a test, the doctor either takes a sample of amniotic fluid, a process called amniocentesis, or takes a sample of cells from the placenta, a process called chorionic villus sampling. Then the cells are sent to a lab, where they go through one of the methods used to diagnose Fragile X. Cells that contain a larger number of CGG repeats would be diagnosed as having Fragile X.
These tests can be done on many different types of body tissues. In most cases, a simple blood test provides the cells needed. But cells from hair roots and from inside the cheek can also be used. If you or one of your family members wants to be tested, talk to your health care provider. He or she will likely take a sample of your blood and send it to a lab. The results will come back in a number of weeks. For more information on tests for Fragile X and their features, please refer to the Additional Resources section.
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Fragile X Syndrome - Symptoms Question: What symptoms do you or your loved one experience from fragile X syndrome? How do you cope?
Fragile X Syndrome - Carrier Question: Did you ever undergo genetic testing to see if you are a fragile X syndrome carrier?
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